'Work it out': Evaluation of a chronic condition self-management program for urban Aboriginal and Torres Strait Islander people with or at risk of cardiovascular disease

This thesis evaluates a chronic condition self-management program for Aboriginal and Torres Strait Islander people in urban south-east Queensland who have or are at risk of cardiovascular disease. Outcomes showed short-term improvements for some anthropometry measures which could be a trend for improvement in other anthropometry indicators over the longer term. The program was of particular benefit for participants who had several social and emotional wellbeing conditions. The use of an Aboriginal and Torres Strait Islander conceptual framework was critical in undertaking culturally competent quantitative research in this project.

Getting your life back on track after stroke : a phase II multi-centered, single-blind, randomized, controlled trial of the Stroke Self-Management Program vs. the Stanford Chronic Condition Self-Management Program or standard care in stroke survivors

Background Self-management is seen as a primary mechanism to support the optimization of care for people with chronic diseases such as symptomatic vascular disease. There are no established and evidence-based stroke-specific chronic disease self-management programs. Our aim is to evaluate whether a stroke-specific program is safe and feasible as part of a Phase II randomized-controlled clinical trial.
Methods Stroke survivors are recruited from a variety of sources including: hospital stroke services, local paper advertisements, Stroke South Australia newsletter (volunteer peer support organization), Divisions of General Practice, and community service providers across Adelaide, South Australia. Subjects are invited to participate in a multi-center, single-blind, randomized, controlled trial. Eligible participants are randomized to either;
• standard care,
• standard care plus a six week generic chronic condition self-management group education program, or,
• standard care plus an eight week stroke specific self-management education group program.
Interventions are conducted after discharge from hospital. Participants are assessed at baseline, immediate post intervention and six months.
Study Outcomes The primary outcome measures determine study feasibility and safety, measuring, recruitment, participation, compliance and adverse events.
Secondary outcomes include:
• positive and active engagement in life measured by the Health Education Impact Questionnaire,
• improvements in quality of life measured by the Assessment of Quality of Life instrument,
• improvements in mood measured by the Irritability, Depression and Anxiety Scale,
• health resource utilization measured by a participant held diary and safety.

Conclusion The results of this study will determine whether a definitive Phase III efficacy trial is justified.

Contextual factors related to chronic condition in portuguese adolescents: Highlights from the HBSC/WHO study

Adolescence’s changes may become more pronounced when living with a chronic condition (CC). This study aims to examined the differences in satisfaction with family life, perception of school competence and “pressure with homework” of Portuguese adolescents’ 1) living with CC; 2) how living with CC affects school participation; taking into account age, gender and family socioeconomic status (SES). Five thousand fifty Portuguese adolescents (mean age 14 ± 1.85) of the Health Behaviour in School-aged Children (HBSC/WHO) were included. Results showed increased vulnerability in adolescents living with CC, presenting a lower satisfaction with family life and poor school outcomes. Younger boys, having a higher SES and not having CC are significantly associated with satisfaction with family life. Older girls, having a lower SES and living with CC were associated with more stress related to school work. Future interventions should include these features combined with ‘listening’ to adolescents and their needs, allowing their participation in the promotion of personal health.

Chronic condition management and self-management in Aboriginal communities in South Australia : outcomes of a longitudinal study

OBJECTIVES: This paper describes the longitudinal component of a larger mixed methods study into the processes and outcomes of chronic condition management and self-management strategies implemented in three Aboriginal communities in South Australia. The study was designed to document the connection between the application of structured systems of care for Aboriginal people and their longer-term health status. METHODS: The study concentrated on three diverse Aboriginal communities in South Australia; the Port Lincoln Aboriginal Health Service, the Riverland community, and Nunkuwarrin Yunti Aboriginal Health Service in the Adelaide metropolitan area. Repeated-measure clinical data were collected for individual participants using a range of clinical indicators for diabetes (type 1 and 2) and related chronic conditions. Clinical data were analysed using random effects modelling techniques with changes in key clinical indicators being modelled at both the individual and group levels. RESULTS: Where care planning has been in place longer than in other sites overall improvements were noted in BMI, cholesterol (high density and low density lipids) and HbA1c. These results indicate that for Aboriginal patients with complex chronic conditions, participation in and adherence to structured care planning and self-management strategies can contribute to improved overall health status and health outcomes. CONCLUSIONS: The outcomes reported here represent an initial and important step in quantifying the health benefits that can accrue for Aboriginal people living with complex chronic conditions such as diabetes, heart disease and respiratory disease. The study highlights the benefits of developing long-term working relationships with Aboriginal communities as a basis for conducting effective collaborative health research programs.

The internal consistency and construct validity of the partners in health scale : validation of a patient rated chronic condition self-management measure

PURPOSE: The purpose of this study was to test the internal consistency and construct validity of the revised 12-item self-rated Partners in Health (PIH) scale used to assess patients' chronic condition self-management knowledge and behaviours. METHODS: Baseline PIH data were collected for a total of 294 patients with a range of co-morbid chronic conditions including diabetes, cardiovascular disease and arthritis. Scale data for the initial sample of 176 patients were analysed for internal consistency and construct validity using Reliability Analysis and Factor Analysis. Construct validity was tested in a separate sample of 118 patients using confirmatory factor analysis and a structural equation model. RESULTS: Good internal consistency was indicated with a Cronbach's alpha coefficient of 0.82 in the initial sample. Factor analysis for this sample revealed four key factors (knowledge, coping, management of condition and adherence to treatment) across the twelve items of the scale. These four key factors were then confirmed by applying the exploratory structural equation model to the separate sample. CONCLUSION: The PIH scale exhibits construct validity and internal consistency. It therefore is both a generic self-rated clinical tool for assessing self-management in a range of chronic conditions as well as an outcome measure to compare populations and change in patient self-management knowledge and behaviour over time. The four domains of self-management provide a valid measure of patient competency in relation to the self-management of their chronic condition(s).

Next steps in the logic of consumer-led self-management : translating chronic condition self-management programmes (CCSM) into lifestyle management programmes for young people

The techniques applied in chronic condition self-management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why, as a society, we wait until people develop essentially preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better rather than working to avoid or prevent many chronic conditions that develop as a result of people lacking such skills? If we were to teach coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, the overall population impact would be more significant. Therefore why wait until people have chronic conditions before empowering them with basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the main stimulus for triggering health-related behaviour change or can other factors in people’s lives serve to inform and motivate lifestyle change?

Sisyphus and self-management : the chronic condition self-management paradox

Chronic condition self-management is promoted internationally as not only a possible solution to the health problems of our increasingly chronically ill and ageing population, but as part of a new wave of consumer-led and volunteer-managed health care initiatives. Consumers are now indicating that they want to be more involved in the management of their lives and their health care options, while, especially in rural and smaller communities in Australia, a shortage of clinicians means that health care is rapidly changing. This emphasis on self-management raises crucial questions about where consumer action and control in health care should end and where clinical and medical intervention might begin. Hence, as in the case of Sisyphus and his rock, the self-management process is a difficult and demanding one that poses major challenges and loads for health system reformers and represents a struggle in which new difficulties are constantly emerging. This paper examines some implications of new self-management approaches to chronic illness from an ideological perspective and highlights key elements that underpin the effort to promote health-related lifestyle change. While peer-led self-management programs may assist certain individuals to live engaged and meaningful lives, the essential social and economic determinants of health and wellbeing mean that these programs are not the answer to our urgent need for major reform in the health care arena. Rather, self-management, from an ideological perspective, represents a minor adjustment to the fabric of our health system.

Translating chronic condition self-management programmes (CCSM) into lifestyle management programmes for young people

The techniques applied in chronic condition self-management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why, as a society, we wait until people develop essentially preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better rather than working to avoid or prevent many chronic conditions that develop as a result of people lacking such skills? If we were to teach coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, the overall population impact would be more significant. Therefore why wait until people have chronic conditions before empowering them with basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the main stimulus for triggering health-related behaviour change or can other factors in people's lives serve to inform and motivate lifestyle change.

Measuring chronic condition self-management in an Australian community: factor structure of the revised Partners in Health (PIH) scale

Purpose To evaluate the factor structure of the revised Partners in Health (PIH) scale for measuring chronic condition self-management in a representative sample from the Australian community.

Methods A series of consultations between clinical groups underpinned the revision of the PIH. The factors in the revised instrument were proposed to be: knowledge of illness and treatment, patient–health professional partnership, recognition and management of symptoms and coping with chronic illness. Participants (N = 904) reporting having a chronic illness completed the revised 12-item scale. Two a priori models, the 4-factor and bi-factor models were then evaluated using Bayesian confirmatory factor analysis (BCFA). Final model selection was established on model complexity, posterior predictive p values and deviance information criterion.

Results Both 4-factor and bi-factor BCFA models with small informative priors for cross-loadings provided an acceptable fit with the data. The 4-factor model was shown to provide a better and more parsimonious fit with the observed data in terms of substantive theory. McDonald’s omega coefficients indicated that the reliability of subscale raw scores was mostly in the acceptable range.

Conclusion The findings showed that the PIH scale is a relevant and structurally valid instrument for measuring chronic condition self-management in an Australian community. The PIH scale may help health professionals to introduce the concept of self-management to their patients and provide assessment of areas of self-management. A limitation is the narrow range of validated PIH measurement properties to date. Further research is needed to evaluate other important properties such as test–retest reliability, responsiveness over time and content validity.

The relationship between chronic disease self-efficacy and nutritional status, functional ability and quality of life in older adults at risk of hospital readmission

Background and significance: Older adults with chronic diseases are at increasing risk of hospital admission and readmission. Approximately 75% of adults have at least one chronic condition, and the odds of developing a chronic condition increases with age. Chronic diseases consume about 70% of the total Australian health expenditure, and about 59% of hospital events for chronic conditions are potentially preventable. These figures have brought to light the importance of the management of chronic disease among the growing older population. Many studies have endeavoured to develop effective chronic disease management programs by applying social cognitive theory. However, limited studies have focused on chronic disease self-management in older adults at high risk of hospital readmission. Moreover, although the majority of studies have covered wide and valuable outcome measures, there is scant evidence on examining the fundamental health outcomes such as nutritional status, functional status and health-related quality of life. Aim: The aim of this research was to test social cognitive theory in relation to self-efficacy in managing chronic disease and three health outcomes, namely nutritional status, functional status, and health-related quality of life, in older adults at high risk of hospital readmission. Methods: A cross-sectional study design was employed for this research. Three studies were undertaken. Study One examined the nutritional status and validation of a nutritional screening tool; Study Two explored the relationships between participants. characteristics, self-efficacy beliefs, and health outcomes based on the study.s hypothesized model; Study Three tested a theoretical model based on social cognitive theory, which examines potential mechanisms of the mediation effects of social support and self-efficacy beliefs. One hundred and fifty-seven patients aged 65 years and older with a medical admission and at least one risk factor for readmission were recruited. Data were collected from medical records on demographics, medical history, and from self-report questionnaires. The nutrition data were collected by two registered nurses. For Study One, a contingency table and the kappa statistic was used to determine the validity of the Malnutrition Screening Tool. In Study Two, standard multiple regression, hierarchical multiple regression and logistic regression were undertaken to determine the significant influential predictors for the three health outcome measures. For Study Three, a structural equation modelling approach was taken to test the hypothesized self-efficacy model. Results: The findings of Study One suggested that a high prevalence of malnutrition continues to be a concern in older adults as the prevalence of malnutrition was 20.6% according to the Subjective Global Assessment. Additionally, the findings confirmed that the Malnutrition Screening Tool is a valid nutritional screening tool for hospitalized older adults at risk of readmission when compared to the Subjective Global Assessment with high sensitivity (94%), and specificity (89%) and substantial agreement between these two methods (k = .74, p < .001; 95% CI .62-.86). Analysis data for Study Two found that depressive symptoms and perceived social support were the two strongest influential factors for self-efficacy in managing chronic disease in a hierarchical multiple regression. Results of multivariable regression models suggested advancing age, depressive symptoms and less tangible support were three important predictors for malnutrition. In terms of functional status, a standard regression model found that social support was the strongest predictor for the Instrumental Activities of Daily Living, followed by self-efficacy in managing chronic disease. The results of standard multiple regression revealed that the number of hospital readmission risk factors adversely affected the physical component score, while depressive symptoms and self-efficacy beliefs were two significant predictors for the mental component score. In Study Three, the results of the structural equation modelling found that self-efficacy partially mediated the effect of health characteristics and depression on health-related quality of life. The health characteristics had strong direct effects on functional status and body mass index. The results also indicated that social support partially mediated the relationship between health characteristics and functional status. With regard to the joint effects of social support and self-efficacy, social support fully mediated the effect of health characteristics on self-efficacy, and self-efficacy partially mediated the effect of social support on functional status and health-related quality of life. The results also demonstrated that the models fitted the data well with relative high variance explained by the models, implying the hypothesized constructs under discussion were highly relevant, and hence the application for social cognitive theory in this context was supported. Conclusion: This thesis highlights the applicability of social cognitive theory on chronic disease self-management in older adults at risk of hospital readmission. Further studies are recommended to validate and continue to extend the development of social cognitive theory on chronic disease self-management in older adults to improve their nutritional and functional status, and health-related quality of life.

Self-Management of Chronic Pain: Interventions, Strategies, Barriers, and Facilitators

Background & Purpose: Chronic pain is a prevalent chronic condition for which the best management options rarely provide complete relief. Individuals with chronic pain with neuropathic characteristics (NC) report more severe pain and experience less relief from interventions. Little is known about current self-management practices. The purpose of this dissertation was to inform self-management of chronic pain with and without NC at the individual, health system, and policy levels using the Innovative Care for Chronic Conditions Framework. Methods: The study included a systematic search and review and cross-sectional survey. The review evaluated the evidence for chronic pain self-management interventions and explored the role of health care providers in supporting self-management. The survey was mailed to 8,000 randomly selected Canadians in November 2011, and non-respondents were followed-up in May 2012. Screening questions were included for both chronic pain and NC. The questionnaire captured pain descriptions, self-management strategies, and self-management barriers, and facilitators. Results: Findings of the review suggested that self-management interventions are effective in improving pain and health outcomes. Health care professionals provided self-management advice and referred individuals to self-management interventions. The questionnaire was completed by 1,520 Canadians. Those with chronic pain (n=710) identified primary care physicians as the most helpful pain management professional. Overall, use of non-pharmaceutical medical self-management strategies was low. While use positive emotional self-management strategies was high, individuals with NC were more likely to use negative emotional self-management strategies compared to those without NC. Multiple self-management barriers and facilitators were identified, however those with NC were more likely than those without NC to experience low self-efficacy, depression and severe pain which may impair the ability to self-management. Conclusions: Health care professionals have the opportunity to improve chronic pain outcomes by providing self-management advice, referring to self-management interventions, and addressing self-management barriers and facilitators. Individuals with NC may require additional health services to address their greater self-management challenges, and further research is needed to identify non-pharmaceutical interventions effective in relieving chronic pain with NC. Public policy is needed to facilitate health systems in providing long-term self-management support for individuals with chronic pain.

The effect of multiple chronic conditions on self-rated health, disability and quality of life among the older populations of Northern Ireland and the Republic of Ireland: a comparison of two nationally representative cross-sectional surveys

Objectives: Multimorbidity is common in the older population, but the impact of combinations of chronic conditions on disability and quality of life (QoL) is not well known. This analysis explores the effect of specific combinations of chronic diseases on disability, QoL and self-rated health (SRH).

Design: We used data from two population representative cross-sectional studies, the Northern Ireland Health and Social Wellbeing Survey (NIHSWS) 2005 and the Survey of Lifestyle, Attitudes and Nutrition (SLAN) 2007 (conducted in the Republic of Ireland).

Setting: Randomly selected community-living participants were interviewed at home.

Participants: A total of 6159 participants aged 50 years and older were included in the analysis.

Outcome measures: Chronic conditions were classified as cardiovascular disease, chronic pain,diabetes or respiratory disease. Interaction terms estimated by logistic regression were used to examine the effects of multiple chronic conditions on disability, SRH and QoL.

Results: Each chronic condition group was correlated with each of the others after adjusting for sociodemographic factors. Those from Northern Ireland were more likely to report a limitation in daily activities (45%) compared to those from the Republic of Ireland (21%). Each condition had an independent effect on disability, SRH and QoL, and those with multiple chronic conditions reported the worst outcomes. However, there were no statistically significant positive interactions between chronic condition groups with respect to any outcome.

Conclusions: Chronic conditions affect individuals largely independent of each other with respect to their effect on disability, SRH and QoL. However, a significant proportion of the population aged 50 years and over across the island of Ireland lives with multimorbidity,and this group is at the highest risk of disability, poor SRH and poor QoL.